Tips for spinal members

Hi everyone,

On October 16, 2020, I had a brain surgery (craniotomy and endovascular procedure, after failed embolization) for an aggressive intracranial dural arteriovenous fistula (Cognard type V, Borden type III) on my spinal cord, from the cervicomedullary junction to C7. Contrary to most members of this community, it was an emergency procedure, therefore everything went fast and I didn’t have much time or choice.

While the surgery was a success, the 3-month post-op scheduled angiogram was never performed and I never received assistance for my rehabilitation regarding learning how to walk again. I had to do a lot of research so that I find tools to help me regain some mobility; the information I received from this group was very helpful too.

My Life has drastically changed since then: I had to learn how to walk again, I have bladder and bowel issues, and muscle weakness. Although my walking is improving, I still need to use a cane or walking sticks, because I lose my balance and I get tired after a while. Despite all this, I am confident I’ll be able to walk “normally” without any aid in the long run. Patience and consistent effort are key.

Here is a list of a few useful things I did to help me:

I waited 4 months after the surgery before using any device, because I was very weak, and I couldn’t stand being touched. Everything hurt, from droplets to light touch.

  • I bought a TENS/EMS Unit to reduce the pain in my shoulders/back/pelvic floor and stimulate the nerves and muscles in the abdominal area (for constipation) and on my back. Thanks to this tiny device, I was able to stop taking pain relievers. (It’s available on Amazon.)
  • I bought a massager to deal with the pain in my legs, back and shoulders. However, massaging was not a good tool for me because it hurt too much and my body ached a lot. Even after 8 months, I still don’t use it that much. (It’s available on Amazon.)
  • After receiving the approval of my surgeon (8 weeks post surgery), I started to do Yin Yoga exercises and Pilates I found on YouTube. For 4 months, I did Yoga, Pilates and stretching exercises every day, 3 of 4 times a day. Now I stretch twice a day, every day.
  • I bought a vibration plate, after a member of this group mentioned whole body vibration therapy in her post. I did some research first, in order to see if this device was appropriate to my case. I started using the vibration platform early in May, and it gave me a boost almost immediately. Before, I had a hard time walking without using my walking sticks after the 1-kilometer mark. Since I started using the platform, my endurance and gait have greatly improved: I walk 2 km without sticks almost pain free; I walk 3 km without sticks with some pain; I can walk more than 4 km with the sticks and some pain. I had to start using the platform gradually, because the device I bought is very powerful and intense. I use it every day, three times a day, for 30 min in total (or more if I don’t stand or sit on it). It helps with balance, muscle building, endurance, relaxation, etc. It’s a huge investment, but I am so happy I made it, because I have tangible results. (You can buy this type of device on Amazon.)
  • I swim twice/three times a week for 45 minutes at my local swimming pool. I wear fins and use a kickboard, as I just started again. My goal is to get enough strength and endurance to be able to swim without aids.
  • Meditation and self-hypnosis
  • Free-style dancing

I take no medication, but some Tylenol or Advil when the pain is too intense (very rare). I walk at least 2 km/day, every day; I exercise every single day (resistance training, weight lifting, cardio training, stretching, Pilates, Yoga). No rest days, unless I’m sick.

Improvements are VERY slow, but they are here. My aim is to walk 5km without sticks and pain free, on top of going back to dancing. I used to dance a lot before my surgery, and dance is an essential part of my life, because it helped me overcome serious mental health issues in the past.

I try to maintain a positive outlook on Life and avoid thinking about the future. I make no plans in the long run. I take one day at a time.

PS: I’ve been on disability leave since my surgery.

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@Karine

It’s great to hear from you and understand your progress. I hope you’re feeling good about it and keen to keep going.

I’m just going to ping the @Spinal team so people know you’ve posted. We get fewer spinal posts and I expect people find it all a bit brain-oriented round here, so I’m hoping your Spinal friends will see your post if I nudge it into their inbox :wink:

Really good to read your update! You’re clearly a keen online shopper as well!!

Very best wishes,

Richard

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I’ve never heard anything about a vibration plate. Specifically, where might I find this on Amazon. I don’t know enough to be able to even find it.

Thanks for all the great information.

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I commend your efforts and all the things you are doing. I am 10 months into recovery from surgery on an AVF on T7. It left me with significant nerve and muscle damage on both hands and arms and my left leg from foot to thigh as well as intense upper back pain and bladder and bowel issues. Like you, I have done my OT/PT exercises as well as what my personal trainer has given me daily as I considered myself to be in at home rehab. I also do acupuncture once a week. I had never heard of the vibrating plate but I bought a mattress that has four massaging zones which gently calms my body and reduces the tension from the pain. It is really helping and I can use it as much as I want. The funny part is my two dogs also love it! My progress like yours has been slow but I’m celebrating each small improvement. I walk a minimum of 4 miles/day but in the house as my balance and stabllity is bad. I do half barefoot and the last two with shoes which is significantly harder. By the way, I may be the matriarch of our little exclusive club - I’m 70 way later to this party than most people! Hugs and best regards Nancy M

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Hi Nancy,
I was diagnosed with DAVF at T10 in September 2015 and had a laminectomy in Oct 2015 to fix the mall functioning artery. Previously I can’t feel both of my legs and had bladder and bowel issues. Is a very slow rehab progress with help from OT and Physio. My legs nerves slowly improves and now I have full feeling of my legs and no longer have blader and bowel issues. Just from the knee down I have strong spasm on both legs. In February 2020 I had an ITB pump implant to control my spasticity. I improves my walking a lot, but I still have balancing issues. I can walk in the house without walking stick, but outside I use a walking stick or walker to avoid falls.
I am 68 and retired.
Kind regards, Franz

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Hi,

Here are some examples of whole body vibration (WBV) plateforms you can find on amazon: Amazon.com : lifepro vibration plate exercise machine.

As I’m using a Lifepro model, I searched for similar items on Amazon.com (the results are based on my location in Canada though).

Article on WBV and rehabilitation: Whole Body Vibration: Potential Benefits in the Management of Pain and Physical Function.

I strongly recommend that you do you some research on this new technology based on your personal needs. As it is a powerful machine, you have to start using it slowly and at a very low intensity, then increase the use/intensity as your body gets used to it, otherwise it will get overwhelmed/you can hurt yourself. You should ask you health care provider if they know this technology and/or check with them that it’s safe for you to use it.

I took a risk when I bought my unit, a LifePro Rumblex 4D Plus (https://www.amazon.ca/Rumblex-Vibration-Plate-Exercise-Machine/dp/B084KZ4J6N/ref=sr_1_2_sspa?crid=1NTAUBOJCTIXF&dchild=1&keywords=rumblex+plus+4d+vibration+plate&qid=1628634457&sprefix=rumbl%2Caps%2C266&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyVlJNNDNVWjZWSjNSJmVuY3J5cHRlZElkPUEwODcwMDA1MzJGS0FaOEdXMVcyMCZlbmNyeXB0ZWRBZElkPUEwNzM1NzU3MkZGOThOM1lKRUFLSCZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=), because I had no specialized help and I was in too much pain. I have no regrets because it helps me tremendously. I love this device!

Hi Nancy,

Keep up the good work! Exercising is a must for us, spinal members. I’m sure your bed is helping a lot with the pain. I really enjoy my WBV plateform, because it helps with muscle strenghening/building, balance, flexibility (etc.) and can be used for relaxation also. It’s very versatile. As i didn’t have any trainer or physiotherapist to help me, I invested in buying this plateform, that I use daily to perform my exercises.
I wish you the best! Hugs
Karine

Your attitude and determination are wonderful. I’m going to check out the Vibration plate, thank you for the info. Your hard work will pay off over the coming years.

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